Fundraiser set up for 21 year-old from Eastbourne suffering from severe refractory, uncontrolled epilepsy

Joel Culver is 21 years old, disabled and has special needs and is classed as a SWAN (syndrome without a name) because he is still undiagnosed with a syndrome.

The fundraiser has been set up by Joel’s mother Tracy to help provide respite care. Respite care means taking a break from caring, while the person that is being cared for is looked after by someone else.

Tracey said: “Joel is is classed as a SWAN because he is still undiagnosed with a syndrome. What we do know though is Joel has severe refractory, uncontrolled epilepsy, he can have up to 200 plus seizures a day.

"He has a diplegic stance, meaning he walks like a toddler or drunk man and doesn't have proper control. He can't hop, skip, jump, he can't talk, he uses small amounts of makaton.

“He is double incontinent, he has bowel problems, reflux, ADHD, autistic tendencies, behavioural problems, severe anxiety, especially in transitions, no sense of fear or danger, sensory processing disorder, problems eating and drinking and sleep disorder.”

Joel have been respite care before but Tracy believes that the fundraiser will help to provide a safer solution for her son.

She said: “Joel has been to respite places in the past and has come back severely hurt. He had a deep hole in his head, the shape of an almond. At the other place he came back what looks like carpet burn, all the way down his back. Both times they don’t know what happened despite him meant to have been having one to one staffing.

“A few years later and I was open to trying an adult home, but that did not go well, so now I am choosing what I consider to be the best and safest option for Joel and that is to have night staff at our own home instead.

“I believe the cheapest and easiest way for me to do this, baring in mind not many places allow big dogs, is for me to buy a campervan/motor home. This would give me and Marley a place to sleep, whilst also giving me some freedom to travel. I was thinking of a little one man birth, but if I had a bigger one, I could also take Joel on holidays.

"I’m sure you all know how much more expensive disabled homes/holidays are but if we had a motor home, we could go anywhere without worrying about the extra costs.”

"I am, reaching out, to humbly ask for any help you can offer, towards providing respite opportunities, as well as holiday opportunities for us as a family. We don’t ever ask without giving in return, but this time, all we can offer in return is heart felt thanks and lots of photos of Joel, myself and Marley, enjoying our travels.

“Thank you so so much for any penny you can spare in these cost of living times, to help towards a camper van/motor home.”